Being the Girl People Call Special

by Stephanie Taylor

I’m Stephanie Taylor, a happy, bubbly 15-year-old girl, but the first 15 years of my life have been a full-on rollercoaster, and I want to share some of it with you.

I was born on the 24th of November 1997 in the UK down south. My mum was giving birth thinking I was going to be a “normal” baby, but no, I was arriving in style with drama all around me. The doctors noticed a massive strawberry birthmark at the bottom of my back, and my feet were up against my legs. They then knew that I was no “normal” baby. The doctors then diagnosed me with the condition sacral agenesis. They told my mum and dad that when I get older I would walk in my own time and my own way. To me, I was just learning like everyone else. I didn’t know different.

My spine ends at L4, and my spinal cord ends at L1. I was referred to Great Ormond Street Children’s Hospital in London as they were the nearest biggest children’s hospital. At 18 months old, I stunned everyone when I started to stand and then walk (well, toddle and fall) around places. I did have to use my favourite little baby walker, though, if I wanted to walk down the street. At the age of 3, I got AFO splints with cute little patterns all over them, but the reason why I needed them was because my left foot was turned so much I was walking on the top of it.

Two years later when I turned 5, I had my very first massive operation in the summer of our biggest heat wave. Not great timing – it was like 40° C (that’s about 104° F for you Yanks), and that’s rare for the UK!! I went into surgery not knowing whether I would ever see my family ever again. Knowing how big the operation was, I clutched my favourite teddy and went down. My mum kissed me goodbye as I was falling asleep. That was the moment when my whole life changed! They did a bladder augmentation, Mitrofanoff, ACE, and bladder neck suspension. There were a few problems, but they sorted them out. When I came around, all I wanted to do was go back to sleep. But after all the sleeping, the first thing I wanted to do was look at where they had operated, so a lovely nurse got a mirror and sat me up, and I looked. It was amazing – I had tubes coming out of me from all angles. I had my ACE tube, my Mitrofanoff tube, a suprapubic tube, a cannula in both hands, and a central line in my neck. It was scary to look at, but I felt fine. I was just so happy that really soon I could wear proper knickers! That was my dream, and it was finally coming true. All my friends wanted dolls and pretty dresses, but I just wanted to be like everyone else . . . to wear proper knickers.

Three months later, I had an operation on my left foot to put it back into the right position as it was giving me loads of pain! I don’t really remember that operation apart from how amazing it looked after the surgery.

I then had a further six surgeries on my feet to correct them so I could walk. The sixth foot surgery I had was last year in 2012. It was brilliant to finally have flattish feet, and my toes were straight, but the excitement hasn’t lasted that long as they are really hurting me now, and I can just about walk it hurts so much.

My eighth surgery was corrective surgery on my ACE just because it was leaking, and I had enough, so they corrected it. It has been perfect to this day. The only time it leaks is when I have just had my washouts.

In November 2009, I was pulled out of high school and started being home educated by my mum because I was so stressed and I was being bullied physically and mentally. I ended up in hospital ill because of the stress, so the only best option for me was to be home educated, and I love it so much.

In 2011, I moved away from my hometown Luton. I couldn’t cope with the stairs any more, and we wanted to move up north, so I’m now living in Crewe, Cheshire, UK. It was the best decision we have ever made. We bought a bungalow, and it’s simply amazing. All my care has moved up north as well, and I’m no longer under care at Great Ormond Street. I’m now under care at Alder Hay Hospital in Liverpool, but they all come to my local hospital, so that’s even better. I had an appointment for my back, and they x-rayed my back. We found out that my pelvis has elongated and the fourth lumbar vertebra has gone at an angle and has fused to my pelvis, making my spine more stable, which I’m really pleased about, but I think it’s giving me more back pain. And my hips are at different levels in my pelvis.

I’ve always used my wheelchair for distances, but now I need to use it more even for shopping as I’m getting weaker when I walk. My legs and hips and back can’t keep me up anymore, which is making me feel really sad because I was hoping I could get to about 18 or 19 before it started happening, but I have accepted it and I am ok about it.

My life has been full on, but I don’t care because I loved every minute of it, and I’m just so happy that I was brought into this world by the most amazing and loving mother! I couldn’t ask for anything more. I have a bright future. I’ve done a 2-week work experience at ITV, and I’m hoping to get a job there next year. And I can start learning to drive in November! So I’m really excited about that. I don’t want to be like everyone else because my disability is part of me and my personality, and I don’t want to change or swap my life for anything or anyone.

The International Sacral Agenesis/Caudal Regression Association is a 501(c)(3) organization.

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